Update on us! (new baby, chicken pox, etc)

[Guest guest]

Well since the baby was born 3 weeks ago, I have been pretty much

AWOL!

Tyler (new baby) is doing beautifully! he has put on a pound and a

half since he was born 3 weeks ago! hes a bit jaundiced, but

nothing their worried about. Overall he is a very healthy newborn.

We will be seeing the mito doc at the end of april, and the plan is

to start running the initial screening tests (carnatine, palmitate

oxidation, CK enzymes, Lactic Acid, etc) on him then, to see if he

is going to be affected or not.

I am doing great! This recovery from having Tyler has been MUCH

faster and easier than with ! I got an infection the week

after he was born, and got VERY sick (temp of 106, felt like death!)

then the antibiotics they put me on put me back in the ER

(clyndamycin and me dont mix apparently), but since then I have been

doing great! I feel wonderful, and dont even need naps anymore!

its wierd having a newborn and being healthy... change of pace for

me!

Now ... its been a crazy while for him...

Because of the chronic diharrhea he had from the cocktail we had to

stop it on the 15th of February. The diharrea cleared up within 2

days, so we know SOMETHING in the cocktail is disagreeing with him

(its not the carnatine, as we stopped that 2 weeks before that and

it didnt help). So now that his tummy has had a chance to settle,

we saw the doc this morning, and will restart him on the cocktail

very slowly next week and figure out which part of it specifically

is bothering him (hes on 6 different things).

In the meantime, the day after I got home from hospital after Tyler

was born broke out in Chicken Pox!!! He weathered them

pretty well, but were now on day 12 of them, and the doctor said

this morning that they are still active, (still getting new spots)

and that hes still contagious... normally they are supposed to be

over after 6 days... he said its likely from the mito that their

dragging on, but that he is getting better and the fever is gone, so

hes not too worried... Now we just have to hope against hope that

Tyler doesnt develop them!! the doctor said however that since im

nursing, even if he does get them they will likely be quite mild, as

hes getting antibodies from me... were hoping!

Im just relieved that managed through them without a major

crash (yet!)... his walking suffered, and his sugars were all over

the place, but for the most part he is doing pretty good...

So thats about it over here! busy busy!

Hope everyone is doing well, Im off to catch up on some emails now!

Keely, (mom to , 26 months-Complex 1, and Tyler, 3 weeks)